Karen,I meant to respond to this news a long long time ago. Hate to read that things have been a nightmare for the past two years. Praying that when Destiney gets her new liver it brings much long-term stability to her medical situation.Where has the time gone? Seems like yesterday we were corresponding about that baby! God bless and stay strong!And I'm here if you need to talk.- Joe

HI, Well after being pretty much a voyeur for the past maybe 12 years we are finally taking the step. I've been raising our 14 1/2 yr old granddaughter since she was almost 2 months old. When she was ... more

Karen and Destiney, Good luck and our thoughts are with you! My son Jared was transplanted just before age 1, and he turned 16 this month! He's a sophomore in high school :) You really bring back the ... more

nadia, so has she been hospitalized for her high ammonia? i go into the hosptial once to three times a month with high ammonia. i get tube feeds at night while i sleep of duocal, argenine, soduim... more

hi karen, thanks for sharing your story. i am allmost 44 year old women with citrullinemia. i am the oldest living with this disorder. my citrullinemia was under control until two years ago when i... more

Thanks Marta! You & I had connected about 11 years ago or so when I first talked with Joe online. Destiney also has citrullinemia, don't know if I said that in the previous message. I can't imagine... more